Appreciating the Self-Worth of Spoonies

I recently learned something important thanks to one of my people, Tinabella, who is studying to become a Licensed Mental Health Counselor.

Tinabella will be an excellent clinician and advocate for her clients. She is intelligent, empathic, caring, and resilient, having to deal with a lifetime of physical challenges and societal obstacles.

Among the things that Tinabella deals with daily is Lyme Disease and its prolonged, enigmatic, devastating impacts. I have seen how Lyme gradually takes people away from their life pursuits and renders them incapacitated. The chronicity of this thief of a disease is still being debated in the medical community.

It is essential that you know that 85% of disabilities, including Lyme, are invisible to others. They do not want to show or act disabled and want the same regard as everyone else.

No pity, platitudes, or negative judgment please!

In one of our sessions, Tinabella referred to herself as a Spoonie.

I confessed that I never heard of the term in all the years I’ve worked with people with physical challenges.

Tinabella sent me an article entitled The Spoon Theory which was written by Christine Miseradino in 2003. Having Lupus, she described to her able-bodied friend what the experience was like managing life with limited energy. She would have to plan her day around how she felt without being completely spent.

Each spoon is a unit of mental and physical exertion that a disabled person must use to accomplish all the activities of daily living and other important tasks. Each spoon has a cost which may be replenished by rest.

You don’t want to run out of spoons in the middle of the day.

And, there’s no guarantee that resting will give you more spoons.

Most people take it for granted that getting up, brushing teeth, taking a shower, getting dressed and putting on makeup is routine and easy. In fact, it’s mindless. It just happens.

Well, if you struggle with a chronic illness or disability that just cost you five spoons.

Be thankful if you are well.

If someone you know has a chronic condition, you are very aware of the planning, the accommodation and flexibility needed to ration the precious energy the condition robs.

I know this firsthand as my wife Jayne struggles with chronic lung issues and orthopedic pain. She fights it everyday to have a “normal” life. For the most part, she can do many of the things she finds meaningful.

But there are many days that Jayne needs to lie down and rest. When things are bad, she can easily lose a day which frustrates the hell out of her.

In non-pandemic times, we travelled all over the world, often bringing along an ingenious compact motorized scooter. We also must figure that there may be days that Jayne needs to be in bed and miss the things we had planned to see.

Nevertheless, we hope to book a trip to the Amalfi Coast of Italy next spring if literally everything is good to go.

I’ve heard horrible things said to people with invisible disability or chronic illness over the past 45 years.

“What the f**k is wrong with you!”

“You’re just using that problem as a crutch (ironic). You’re just lazy!”

“Manage your time better.”

“If you really want to go, you just have to get up and do it!”

The worst thing I ever heard is “YOU’RE JUST A WASTE OF A LIFE. WHY DON’T YOU JUST DIE!”

Such similar cruel speech has been uttered by those in the highest level of government in recent years.

If we appreciate the worth of people like Tinabella and Jayne, we need to be mindful of Spoon Theory to be accommodating.

Some days are just not going to work as planned. Often, It’s off to Plan B, C, D etc.

When you really think about it, that’s a reasonable approach to living in general.

If nothing else that we’ve learned through the COVID-19 experience is that things can change in an instant. The uncertainty that we live with is similar to that of Spoonies before, during and after the pandemic.

Kindness, patience, flexibility, empathy, and respect is so needed in this world, Spoonie or not.

Thank you, Tinabella, for sharing The Spoon Theory with all of us.

I would really like to hear your views and opinions on this and the other Being Worthy blogs.

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